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The Worst Canker Sore Outbreak Ever

bigapplekathleen

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ravenwoodglass Mentor
ravenwoodglass
Posted

"I use antibacterial hand wipes in the car but they are even gluten-free."

This was the only thing that struck me when I read your last post. The reason I have pulled it out is because of the alcohol that is in them. That would be considered to be a safe item and the company would state it is gluten-free even if they used a gluten derived alcohol. I worked for the schools for a while and these products were all over the classrooms. I definately had a problem with them so even though it is a long shot I thought I would mention it. Did you start using a new brand shortly before the outbreaks started?

I am really glad they are getting you into the celiac center, I hope they can figure this out for you and stop the process. You must be in so much pain and I hope it is over soon for you.

  • 7 months later...
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bigapplekathleen Contributor
bigapplekathleen
Posted
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I just wanted to let you all know that they have FINALLY figured it out. (I posted something on another message with complete explanation if you want to look it up.) My new gastro did biopsies 3 weeks ago that showed Lymphocitic Colitis, which certainly explains A LOT. I am better already on 18 days of 9mg/dayEntocort and 6 caplets a day of Pepto Bismol (plus still on 5 mg of prednisone).

Thanks for all of your support through this past year of horrible stuff !

K

ravenwoodglass Mentor
ravenwoodglass
Posted
I just wanted to let you all know that they have FINALLY figured it out. (I posted something on another message with complete explanation if you want to look it up.) My new gastro did biopsies 3 weeks ago that showed Lymphocitic Colitis, which certainly explains A LOT. I am better already on 18 days of 9mg/dayEntocort and 6 caplets a day of Pepto Bismol (plus still on 5 mg of prednisone).

Thanks for all of your support through this past year of horrible stuff !

K

I am so glad they got this figured out and that you are improving. Thanks for letting us know.

ang1e0251 Contributor
ang1e0251
Posted

THanks for letting us know. I have been thinking of you and wondering from time to time how you are. I'm so glad you have a diagnosis.

  • 8 years later...
samund01 Newbie
samund01
Posted

Hi! I'm wondering how you are now? I have similar symptoms and wondering what you found out? 

Posterboy Mentor
Posterboy
Posted
8 hours ago, samund01 said:

Hi! I'm wondering how you are now? I have similar symptoms and wondering what you found out? 

samundd01,

see this thread in spells out how I took Lysine to help my canker sores.

I hope this is helpful.

You might also have low stomach acid.  We get low in our amino acids when our stomach acid is not strong enough to digest proteins.

Open Original Shared Link

from the article

"Jonathan Wright, M.D., well-known and respected holistic physician, states that “Although research in this area is entirely inadequate, its been my clinical observation that calcium, magnesium, iron, zinc, copper, chromium, selenium, manganese, vanadium, molybdenum, cobalt, and many other micro-trace elements are not nearly as well-absorbed in those with poor stomach acid as they are in those whose acid levels are normal. When we test plasma amino acid levels for those with poor stomach function, we frequently find lower than usual levels of one or more of the eight essential amino acids: isoleucine, leucine, lysine, methionine, phenylalanine, threonine, tryptophan, and valine. Often there are functional insufficiencies of folic acid and/or vitamin B12.”

Again I hope this is  helpful but this not medical advice just things I have found that helped me.

And swilling salt water (be sure spit it out and don't swallow it) helps them go away quicker and taking Lysine can help keep them away after your current bout/round of mouth sores go away.

Once or twice a day of Lsyine will keep most ulcers at bay.  Remember it is an essential amino acid and we have to eat food with enough Lysine everyday or we get low in it since our body can't store most amino acids for more than 24 hours and why supplementing with Lysine helps.

Just trying to help those, God being my help, with the things that helped me with those still suffering.

Knowledge is power pass it one.

2 Corinthians 1: 3, 4

3 Blessed be God, even the Father of our Lord Jesus Christ, the Father of mercies, and the God of all comfort;

4 Who comforteth us in all our tribulation, that we may be able to comfort them which are in any trouble, by the comfort wherewith we ourselves are comforted of God.

posterboy,

samund01 Newbie
samund01
Posted

thank you posterboy:)

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    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
      Finding gluten free ingredients

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      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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